Tiredness and Fatigue - Tetralogy of Fallot

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Tiredness and Fatigue - Tetralogy of Fallot

Postby ScottyBHP » Mon Oct 31, 2016 8:57 pm

Hi all

My name is Scott, I am 26 years old and was born with Tetralogy of Fallot.

Since birth I have had a number of procedures at the Birmingham Childrens Hospital, and at the Queen Elizabeth Hospitral Birmingham.

These procedures include:

- Right subclavian shunt (1990)
- Left subclavian shunt (1990)
- Open heart surgery to close the VSD, shunts and enlarge the right ventricular outflow and pulmonary artery (1993)
- Open heart surgery to replace the pulmonary valve and enlarge the pulmonary artery (2002)
- Radiofrequency ablation and implantation of a multisite pacemaker (2008)
- Transcatheter pulmonary valve replacement (2009)
- Implantation of an ICD (2015)

As a child I was mostly unaware of my heart condition and was able to play carefree with friends, with routine hospital appointments being the only real reminder of my condition.

However at the age of 26, and with growing responsibility in my life, I find myself increasingly aware of my heart condition and the limitations it imposes.

I work full time and find myself struglling with tiredness and fatigue on a daily basis. I have never spoken to anyone else with TOF and so find myself asking "is this level of tiredness normal for my condition" or "am I just looking for an excuse for laziness". I often ask myself "what is feels like to be normal" whilst wondering if my level of tiredness is "different" or "worse" than that of a fit and healthy 26 year old. I find being unable to quantify the "real life" extent of my heart condition extremely difficult to deal with.

I have endless questions on how other people with TOF manage with day to day life:

- Do you work full time?
- Do you work part time?
- How do you manage with working and running a household?
- How do you manage with working and having a family?
- Do you ever consider yourself to be lazy?

I would love to hear from anybody with Tetralogy of Fallot who would be willing to share their thoughts, feelings and anxieties on these types of issues, and who may be able to help me put a "real life" perspective on my own heart condition.

Thanks in advance.

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Joined: Mon Oct 31, 2016 7:17 pm
Location: Leamington Spa

Re: Tiredness and Fatigue - Tetralogy of Fallot

Postby Skwerg » Fri Feb 24, 2017 4:14 pm

Hi Scott, I too suffer from tiredness and fatigue, though I'm a little older than you. At 26 I held down a full time job and managed a fairly rounded life much as you seem to. I had to retire on ill health a few years ago, aged 43 - one of the issues that brought to attention was my fatigue. Since then I've been put on a ventilator at night for sleep hypoxia - where you don't get enough oxygen overnight, and are not refreshed. That made a huge difference to me - I used to wake up with a headache every morning. They stopped as soon as I started the ventilator.
I still get tired - I'm tired right now - and like you I think I am excusing laziness, but I assure you, you're not. These days, a full day for me is loading the dishwasher and feeding the pets! ( Okay, not quite, but I often find myself wondering what I've done to get so tired.) A day out can mean I need a day on the couch to recover.
In terms of managing a household, and dealing with family, I'm fortunate that my partner does much of it and is happy that I contribute as much as I can. I realise that that may not be much help to you if you are single. I have no children to advise about - though going by my nieces & nephews effects on their parents, I doubt I'd cope well. The main thing is to figure out what you can do, and learn to pace yourself. If you can only do half your days domestic chores in a day, figure out which can be done less frequently. See if an afternoon nap helps, and if it does, take one when you can. If you're able - and I realise that it's not something everyone can afford, a cleaner for an hour a week can take some of the burden.
It seems one of the joys of ToF is we get to feel 90 years old well before we are!
One last thing: quantifying the extent of our limitations is one of the hardest things to do. No one want's to admit they are unable to do things and everyone tends to assess themselves by looking at their best days. Don't - think about your worst days. and work on that.
I get the impression that like me, you aim to live as 'normal' a life as possible by, if not ignoring your ToF, at least not allowing it to intrude on your life any more than you can. I think that's an admirable and sensible approach - but you need to make sure it is tempered with an awareness of your limits (I've had a rule since I don't know when that I don't run for buses. I'll wait for the next one). If the tiredness is really causing concern, talk to your GP or specialist about it next time you see them. They may well be able to make sugeestions that help, or know who can.

I hope that's given you some answers or at least reassurance. At the risk of blowing my own trumpet, I write about life with a Congenital Heart Condition on my blog at [url]http:\\www.blog.skwerg.co.uk[/url]. Have look and see if that has anything useful.


p.s. I hope you don't mind any assumptions I've made about you in my reply. I apologise if I have missed the mark.
View my Blog at: http://www.blog.skwerg.co.uk
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Joined: Fri Feb 24, 2017 3:26 pm

Re: Tiredness and Fatigue - Tetralogy of Fallot

Postby Miss Summers » Sat Jul 15, 2017 11:43 am

Hello Scott

I'm charlotte and I'm 21. I have TOF I had open heart corrective surgery when I was six months old and I had pulmonary vavle replacement surgery when I was 18.

Like you I try and live as normal as I can. I'm at drama school full time and work on the weekends as a swimming teacher and bar work. I get extremely tired especially in the evenings, I try to get about 8-10 hours sleep a night and rarely but if I can take a nap in the afternoon (but this is rare because my life is extremely busy). Currently I have 3 jobs and I am struggling with it, my ankles swell slightly and I can sleep but I still wake up exhausted. I think you are prone to be more tired with this condition because one side of your heart is always having to work harder even with the vavle replacement my heart in my left side is still enlarge. Have you been checked for anemia ? I think working out what your limit is and how much rest you need is important and it will vary. Slightly on a different topic but do you find it hard to make people or partners understand your condition ?

Miss Summers
Posts: 3
Joined: Sat Jul 15, 2017 10:54 am

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